The Impact of Migraine: From Diagnosis to Stigma

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The team at Migraine.com conducted our annual “Migraine in America” survey with the goal of gaining a better understanding of the challenges faced by those with migraines.

What did the In America survey ask?

In this survey, we included questions about diagnosis, symptoms, treatment, and the impact that migraine has on a person’s day-to-day life. Over 3,900 people completed our 145-question survey, and we have summarized some of the key results from this year’s survey.

When did their migraine journeys start?

While 61% of individuals started experiencing symptoms before the age of 19, only 26% were formally diagnosed with migraines before they were an adult.

What did they say about symptoms and triggers?

The wide-ranging set of symptoms experienced by people with migraines goes well beyond head pain. While 97% of migraine sufferers have identified their triggers, and 91% of these individuals take special steps to avoid them, the most common triggers are impossible to avoid.

What treatment options have they tried?

People with migraine use pain management, abortive, preventative, and rescue medications. Despite the many treatment options migraineurs have tried, only 40% of individuals are satisfied with their current treatment plan.

The interest in alternative and complementary therapies may be driven by the desire to minimize the impact of migraine triggers as well as the perceived lack of effectiveness of traditional OTC and prescription therapies.

How much has migraine treatment cost?

Regardless of insurance status, more than one in three individuals spent over $1,000 per year out of pocket on their migraine-related treatment. This cost includes among other things, co-pays, treatments not covered by insurance, and complementary/alternative therapies.

How has migraine impacted their lives?

The impact of migraine on one’s life can be overwhelming and far-reaching, negatively affecting relationships and the ability to work or attend school.

One out of four people stopped working, took medical leave, or reduced work hours due to migraine.

What about internal and external stigma?

The impact of migraine goes well beyond physical symptoms – the added stigma many feel with migraine can be just as difficult to manage. People with migraine often feel that they must either hide their migraine symptoms from others or feel guilty about disappointing others when they do disclose.

What attitudes and comorbidities come with migraine?

While migraine is often linked to depression or anxiety, two-thirds of those diagnosed with depression or anxiety do not have these conditions identified until after their migraine diagnosis. Almost one-third of those surveyed used antidepressants as a preventive migraine treatment.

Individuals overwhelmingly described their migraines as “debilitating” or “hell” while still emphasizing the horrible pain they experience.